Hi and welcome! It really can be hard to predict recovery from a clot because every clot is different and every patient is different. I've clotted three times (although only one time was PEs) and all the recoveries have been different. There's no way to say when, exactly, you'll start to turn a corner. But, rest assured, it does happen.

The only real guarantee is that it will take longer than you want it to. I don't know anyone here where that hasn't been the truth of it. Not saying that to discourage you, but more to try to give you some perspective.

Most of us don't bounce back from this in a few days. PEs tax some of the biggest and most important systems in the body. Even if the clots disappeared five minutes after you were diagnosed, the damage that they leave behind can take quite a while to heal completely.

The good news, however, is that most of us really do heal completely. It takes time, of course, and the progress seems really slow sometimes, but it does happen.

For me, personally, I was really short of breath (SOB) for probably a couple of weeks. After that, the SOB would come and go. It got worse if I pushed myself too much, if I was out in extreme heat/cold/humidity, if I was doing something new. For a while, pretty much everything made me SOB. Overtime, it got less and less though. You will have good days where you feel like things are going well, and then the next day, you'll feel like you're worse than you were when you started.

For me, actually, I felt worse at about five weeks out than I did when diagnosed. The SOB was less, for sure, but I was EXHAUSTED and I had some pain that hadn't been there at diagnosis. I had a repeat CT, and my clots were gone at that point, but acute recovery was probably another 11 months. Over that time, I gradually improved, but I definitely had days where the SOB, pain, and exhaustion came back and just put me out of commission for a while. There's nothing to do at that point but rest ... pushing through it just makes things worse.

I'm about five and a half years out from my PEs now and I'd say I'm back to normal and I have been for a while. I've bee on warfarin (generic coumadin) the whole time and I haven't reclotted, so hopefully that will be the situation for you as well.

Xarelto is so new, I'm a little skeptical that they'd say that it mostly fails in people who have cancer. I just don't feel like they have enough knowledge about it to concretely say that. I mean, I know that doesn't lesson the stress about cancer, but I will keep a hopeful thought for you that they don't really know what they're talking about on this.

And, also, I don't know who is managing your coumadin, but you really shouldn't be testing every other day and adjusting the dose every other day. Any dose change takes 3-4 days to take full effect, so changing it sooner just means you'll be yo-yo-ing even more. Ideally, what should happen is that you stick with the shots, regardless of the INR, and they work to adjust the dose every few days, once the previous dose has had time to settle. If your primary doctor is trying to do this, it might be that they just aren't very experienced in warfarin management.

Also, don't take it personally that the coumadin is taking a while to get a good dose. It is a finicky drug and it can take a while. Patience is key.

It really does get better, although I know it seems hard to believe that at the start of recovery. Hopefully, you'll start seeing some improvement soon and you'll get some good lab results. Keep us posted!

I can relate to your concerns about getting back to breathing normal and resuming a normal walking routine. I'm almost a year out from biateral PEs and infarcts. The first few weeks, after getting home from the hospital, I used to dream about the long walks I used to take, and I really wondered if I was going to be able to get back to them. It took about a month to be able to walk a mile. I kept progressing after that, and felt better and better overall, but still had a lot of fatigue the first couple of months. And sometimes I'd get chest pain and feel really wiped out. That's all part of the healing process.

As far as coumadin, it can be frustrating at first to get the dose right. I'm a lifer on it because it turns out I have a genetic clotting disorder. It took about a month to get a dose that kept me range. I get checked monthly, and I still need changes in dosing now and then, but nothing major. I hope you can stop doing the Lovenox shots soon. I was lucky, and only had to do them about a week .

PE is so traumatizing in every respect, physical, and mental. I've never felt so vulnerable in my life. I hope you have people who can support you in your recovery. I'm single, but have such wonderful friends that were there for me. They helped me so much.
The people on this site are so helpful as well.

A year ago, I couldn't imagine I'd ever feel as good as I do now. I am so grateful I've recovered well. I wish the same for you.

Thank you so much TossNTurn and Corvid! I am single too and that makes this even SCARIER for me.....no one to watch me, just my dog. I cut up a whole pineapple today and believe me I was petrified holding that knife and being on COUMADIN!!!!! No mishaps--happy to report. I am happy to hear that you, Corvid have managed a mile in 1 month's time. I have something to look forward to there......I have a golden retriever and she is really upset with me that we can't do our 1 mile nature walks!!! But I will keep trying to go further and further, I am doing 1 block walks now once or twice a day and coming home exhausted! Thanks to both of you for getting back to me and for your honesty and hope! I will hang in there! Diane.

I just commented on your other post and mentioned exercise. Glad you're trying. Seriously, I think it's so important to just get out there and start slow and work your way back. Your pup will keep you going. I think mentally, getting outside is such good medicine.

You will settle into a routine with the warfarin and your life will start falling back into place. Day at a time!

Thank you rmb. I just saw your other post before coming here. Yes....I'm trying to walk. I get exhausted so easy now. But Jasmine and I walk the perimeter of the yard every time I bring her out to PEE and if the weather is cooperating we are trying to walk a block in the morning and a block in the evening if I can tolerate that much. Today we didn't walk the block because it's like WINTER out there! BRRR! Was 38 degrees all day with a windchill factor of 25. That isn't saying too much for MAY!!! Well, we will stick to the walks and try to extend them.

That's exactly what I did at first, just walking to and from the garage, then walking a lap or two in the yard, and then down the block. You're doing a great job! Slow wins the race.

I am thinking of you. I was also misdiagnosed with a sprain and a month later was in hospital for a week with a dozen blood clots in my leg and a dozen pulmonary embolisms in EACH LUNG. It took a long time to heal and get the meds right. The cancer scare is a lot to take and I wish you the best possible outcome.

Find a way to feel some peace every day no matter what, I think your dog will help!! Honestly I went on Prozac and Xanex for a while because I felt so anxious. It helped me. A friend taught me to knit and I was too spaced out on blood thinners to do anything too complicated, but everyone around me has a lot of hats and scarves!! I also slept a lot!!

Remember it takes a while to get thru this, a month is a very short time for what you are dealing with. I think I felt better for a while then bad again, then finally got thru it. Listen to your body and know people are thinking of you and wishing you the best!!!

Awesome post TossNTurn!!